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Joining the broken rod club

Hello all you lovely people. I have been a long time away from the forum because I am almost four years post op and had been feeling great. 2 days ago I woke up with some mild pain in the sacrum on the left side. I took some Advil and didn't think anything of it. The next morning after I got out of the shower, I had my left foot propped up to dry off my toes when, POP! I heard a loud cracking noise and I felt something go sproing. It kind of hurt, but not too badly, that is until I squatted down to pick something up off the floor (which is my customary way of doing it since I'm fused t10 to sacrum.) Squatting down was excruciating. That being said, walking, standing, sitting, and lying down feel ok, just a dull ache. And I can only walk really slow. My doctor is Dr. Errico in NYC, who I love. He's out of town, but his nurse practitioner Oksoon had me do an X-ray and said there is a crack in one of the rods. I'm supposed to leave for vacation in a few days but I have an appt to see Dr. E before I go. Seems weird to go on vacation knowing that cracked rod is in there. But I'm getting around ok and my husband and friends will be with me to help me out. And I ordered a fold up grabber to carry in my purse. I'm assuming I'm going to have to have a second surgery to get this fixed. Oksoon told me some people just live with the pain when a rod breaks and opt not to do anything. I don't really see that as an option. The whole reason I decided to get my spine fixed in the first place was to avoid a lifetime of pain. I guess now I'm doubling down on that decision. I feel sad that I'm putting my friends and family through this again. One of my family members is being very unsupportive which is making me feel worse. She thinks I should just turn to holistic healing and pain management. She had scoliosis too and that's how she has dealt with hers. I'm so angry and frustrated right now. I don't care that I have to have another surgery. I can deal with that. I just hate the feeling that I'm somehow letting everyone down. A lot of my friends and family tried to talk me out of doing it in the first place. Now I think they're all thinking "I told you so." Forum Friends, you all have gotten me through more dark times then you know, because I'm a bit of a lurker rather than a poster. I look forward to your words of wisdom once again.

Surgery June 18 by Dr. Errico at NYU Hospital for Joint Diseases at age 41.
Fused T10-Pelvis.
"Ask me about my brand new lordosis!"

Hello all you lovely people. I have been a long time away from the forum because I am almost four years post op and had been feeling great. 2 days ago I woke up with some mild pain in the sacrum on the left side. I took some Advil and didn't think anything of it. The next morning after I got out of the shower, I had my left foot propped up to dry off my toes when, POP! I heard a loud cracking noise and I felt something go sproing. It kind of hurt, but not too badly, that is until I squatted down to pick something up off the floor (which is my customary way of doing it since I'm fused t10 to sacrum.) Squatting down was excruciating. That being said, walking, standing, sitting, and lying down feel ok, just a dull ache. And I can only walk really slow. My doctor is Dr. Errico in NYC, who I love. He's out of town, but his nurse practitioner Oksoon had me do an X-ray and said there is a crack in one of the rods. I'm supposed to leave for vacation in a few days but I have an appt to see Dr. E before I go. Seems weird to go on vacation knowing that cracked rod is in there. But I'm getting around ok and my husband and friends will be with me to help me out. And I ordered a fold up grabber to carry in my purse. I'm assuming I'm going to have to have a second surgery to get this fixed. Oksoon told me some people just live with the pain when a rod breaks and opt not to do anything. I don't really see that as an option. The whole reason I decided to get my spine fixed in the first place was to avoid a lifetime of pain. I guess now I'm doubling down on that decision. I feel sad that I'm putting my friends and family through this again. One of my family members is being very unsupportive which is making me feel worse. She thinks I should just turn to holistic healing and pain management. She had scoliosis too and that's how she has dealt with hers. I'm so angry and frustrated right now. I don't care that I have to have another surgery. I can deal with that. I just hate the feeling that I'm somehow letting everyone down. A lot of my friends and family tried to talk me out of doing it in the first place. Now I think they're all thinking "I told you so." Forum Friends, you all have gotten me through more dark times then you know, because I'm a bit of a lurker rather than a poster. I look forward to your words of wisdom once again.

Hi...

If you have an area that didn't fuse, which is likely, the surgery to fix it is usually described as being very easy. Don't let it get to you. It's just a tiny detour.

--Linda

Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
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Surgery 2/10/93 A/P fusion T4-L3
Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

I am sorry this happened. Rod breaking and fusing is one of the things we all worry about. Dr Lenke has reported finding them 8-1/2 years post. (smug face)

Gayle had her thread a while back "Pop heard around the world" you might look for it. She had her revision surgery along with Jenee and both are doing fine now....

We all have to be prepared for things that might happen during or after scoliosis surgery. For those that come through good, consider yourselves lucky....I am the luckiest person here, and my neck is hammered....if I don't have it fused, it might self fuse and then I would have to post as the Tin Man. (With that gay metallic smile) Ha ha

I hope you can accept that this happened and move forward....Its kind of hard listening to all the others and their advice when we have to do all the pain and suffering....go ahead and vent if you have to.

Accepting, moving forward, tiny detour - got it! Thank you. Thanks for having my "back." (A little scoliosis humor.) My latest paranoia is that I'm going to get to Dr. E tomorrow, and he'll say, "What crack, your hardware looks fine." (It was his nurse practitioner who identified the cracked rod on the x-ray.) Or, "No, that's not serious enough to warrant doing anything about it, you'll just have to live with it." I feel fine when I'm at rest, but I can't bend down to pick anything up, and I simply can't live like that forever. I'm only 46. I plan on living at least another 40-50 years! I need to be independent. So, worries are running through my head. NYU has this online "My Chart" thing, and they posted the results of my x-ray to the chart, done by I guess the x-ray technician, and it says no hardware is broken in the analysis section. Why would it say that? Maybe Oksoon is wrong. Not that I want there to be a cracked rod, but I just need to know this pain is not in my head. And it's not so much the pain, it's that it feels like the left side of my body came "unhinged" or "unhooked." I'm walking a little funny. I can only take short steps. I feel like my left leg is dragging a little. I hope Dr. E doesn't just tell me to deal with it. I'm not dying to have another surgery, but I want this fixed. I loved my new back. I feel like I broke a brand new toy I'm not scared of another surgery. Especially if it's not as bad as the first one. I'm going to be better prepared to get off the painkillers sooner. And I'm going to do it according to a schedule so I don't go through withdrawal and get sick again. And once I'm off the painkillers I will try to work from home some, so I won't worry so much about losing my job. Hey, one bright side to another surgery is that now I'm more experienced!

Surgery June 18 by Dr. Errico at NYU Hospital for Joint Diseases at age 41.
Fused T10-Pelvis.
"Ask me about my brand new lordosis!"

Accepting, moving forward, tiny detour - got it! Thank you. Thanks for having my "back." (A little scoliosis humor.) My latest paranoia is that I'm going to get to Dr. E tomorrow, and he'll say, "What crack, your hardware looks fine." (It was his nurse practitioner who identified the cracked rod on the x-ray.) Or, "No, that's not serious enough to warrant doing anything about it, you'll just have to live with it." I feel fine when I'm at rest, but I can't bend down to pick anything up, and I simply can't live like that forever. I'm only 46. I plan on living at least another 40-50 years! I need to be independent. So, worries are running through my head. NYU has this online "My Chart" thing, and they posted the results of my x-ray to the chart, done by I guess the x-ray technician, and it says no hardware is broken in the analysis section. Why would it say that? Maybe Oksoon is wrong. Not that I want there to be a cracked rod, but I just need to know this pain is not in my head. And it's not so much the pain, it's that it feels like the left side of my body came "unhinged" or "unhooked." I'm walking a little funny. I can only take short steps. I feel like my left leg is dragging a little. I hope Dr. E doesn't just tell me to deal with it. I'm not dying to have another surgery, but I want this fixed. I loved my new back. I feel like I broke a brand new toy I'm not scared of another surgery. Especially if it's not as bad as the first one. I'm going to be better prepared to get off the painkillers sooner. And I'm going to do it according to a schedule so I don't go through withdrawal and get sick again. And once I'm off the painkillers I will try to work from home some, so I won't worry so much about losing my job. Hey, one bright side to another surgery is that now I'm more experienced!

Hi...

Interesting that the radiologist states that there are no breaks and the NP states that there is. Some breaks are not very obvious, and they can be really difficult to spot. One of the studies in which I was involved had a very high rod breakage rate, so I got really good at spotting fractures. If you're not looking for it, it's easy to miss. It may be that the NP was able to spot it because she was looking for it, after hearing you talk about the pop. The radiologist may not have had that same info.

The good news is that, either way, you'll have the info in a matter of hours.

Regards,
Linda

Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
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Surgery 2/10/93 A/P fusion T4-L3
Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

Sorry that some of your friends and famity are not supportive. Having major spinal surgery is totally a craps shoot. If we have a problem after surgery, we say "If I had Dr. Xxx then I would not have had a problem". There is no way of knowing both what life would be like in both scenerios, having surgery and not having surgery or having one surgeon or another. Maybe if you didn't have surgery you would be in a wheelchair addicted to dilaudid or if you had chosen a different surgeon, you might not have survived the surgery.

Friends and family that are not supportive are toxic. You don't need to be around such people. You have not dis appointed anyone.

I tried to post an update last week while I was on vacation but I guess my phone ate it before it could get posted. Whoops. So I saw Dr. Errico the day I left, and he confirmed there is a crack in the rod on the left side. I'm going to try to attach a photo of the xray. It's between the 3rd and 4th screws up from the bottom. He said he couldn't tell me what our next step should be until we have more information, so he ordered a cat scan, which I'm doing tomorrow morning. Then I go back to see him this Thursday. He says we should be able to tell from the cat scan if the break was due to non-fusion or "bridged bone," or if it just broke on it's own due to wear and tear. One of his fellows (there's always fellows - I do not like those guys as a general rule) told me that the cat scan will show a dark area if the bone isn't fused right. And Dr. Errico said that if it's a non-fusion, we will need to go in and fix it because it will cause the rod on the other side to break also. But if the fusion is good, well then that's where he wasn't entirely clear. He implied that for some people after a rod breaks the pain will subside after a week or two, and if that happens, he implied we might just do nothing. So, I gamely pretended for the last week that it was in fact getting better, because, while I'm both a hypochondriac, and a hypochonriac-chondriac (fear of being labeled a hypochondriac!) I don't want to have another surgery, because I have a lot of fun things planned this summer, and I'm also worried that my employer will start to lose patience with me if I take another medical leave of absence, and also, as I mentioned, I feel really terrible about putting my friends and family through this again. But, I believe in the healing power of positive thinking, so for 3-4 days while I was trudging around Spain (which was fantastic, by the way, and fulfillment of a life long dream) I pretended like it was getting better and *believed* it was getting better and told my husband and friends that it was was feeling better. And honestly, walking and standing and sitting and lying down are really virtually pain free. It's bending and squatting which are the killers, and the morning I spent packing up my suitcase for our move from Madrid to Barcelona basically did me in and totally killed my positive-thinking-as-healing plan, because after that I could barely walk. But then I rested for a few hours on the train, and it felt better again. But then I had a "falling off the curb" incident while trying to hail a taxi and I hurt myself again. But then, according to pattern, I rested, and I felt better. But then... there was a fly swatting incident where I must have completely forgotten I was injured in my rush to kill a disgusting fly, and then I hurt again. Anyhow, so it goes. Back home now and trying to load laundry in and out of my side load machine, and trying to load and unload the dish washer, it's not doing so well. I've pulled out all my old tools again (thank God I saved them), the grabbers, the long handled hook, the long handled shoe horn, and this really clever I must say tool I invented that I can tape my razor to so I can shave my legs. Anyhow, on pins and needles now waiting for the verdict from Dr. Errico on Thursday, surgery or no. And actually my vote is surgery because unfortunately I need to be able to do housework going forward. And also I feel like I worked so hard after the original surgery to get where I am, and I want that back again. I was so happy to be able to do yoga again and I was running a little, and I don't want to have to give that up. So I want to get this damn thing fixed so I can have my life back. And I hate the waiting to hear if and when, because I need to make plans. I'm supposed to go to a conference in mid-July, and I need to cancel it soon if I'm going to cancel it. Erg, I hate the waiting. I want to know my fate!

Surgery June 18 by Dr. Errico at NYU Hospital for Joint Diseases at age 41.
Fused T10-Pelvis.
"Ask me about my brand new lordosis!"

Ha ha!.....My weak attempt, but you guys have forgotten how clever Seuss was.

I guess that was a result of reading his books as a child....They were everywhere 50 years ago.

One of my favorites was or is "Today you are you! That is truer than true! There is no one alive that is you-er than you." (smiley face) I remember running around at age 7 saying "nobody is you-er than me!"

I miss the city, (That's New York).....I lived 4 miles away from Manhattan years ago, but I don't miss the subways....

I did a lot of traveling in major pain before my surgeries. I would have to stand in the back of the plane on the long flights. Sometimes I just cant believe that I made it through all that.

Our efforts as adult scoli patients are sometimes an act of desperation. After years of battling major pain, fighting my own decision, I knew in Sept 2007, I was ready.

But my decision was one of those "nobody is you-er than me" things (Seuss logic,) it was solely my decision. A very personal sort of thing, how could I listen to those that were against surgery...

My surgeon would take his finger and draw the incision lines on me so I would knew what to expect. This really is a good idea for surgeons to do as it eliminates any misconstrued meanings with medical terminology. If a patient is unsure, just ask. This helps if they intend on going in from the side or the front. XLIF, ALIF

Many here have had revisions and state that its not too bad.....Dr Errico is also a genius caliber surgeon so that should help ease your pre-surgical stress some. I would have thoroughly enjoyed tagging along with you for your appointment so I could ask questions.

I asked him how he was going to fix it and he says he's probably going to put a new rod next to the broken one and then add some screws and then cement the whole thing with a bone graft. But he reserves the right to change his mind once he gets in there. Ed I wish you could come with me next time, you would remember all the things I forget to ask! 3 weeks to go now. Starting to get nervous but looking forward to having it fixed as the pain is starting to get worse. Job very supportive, hopefully able to work from home post op. Wish I could write more but I prefer to lay down now all the time instead of sitting at my desk. Hard to type on this stupid phone!

Surgery June 18 by Dr. Errico at NYU Hospital for Joint Diseases at age 41.
Fused T10-Pelvis.
"Ask me about my brand new lordosis!"